Autism making me really struggle with the 2 Week Wait for Haematology. Can anyone tell me what will happen at my 1st appointment?

Hi,

I’m wondering if anyone could tell me what the first appointment with the haematology team will be like? There is no information online and I am autistic so really struggling with the uncertainty.

I have been back and forth to the gp for months with extreme fatigue, hard lymphnodes near my ear, increasing night sweats, itchiness (especially on legs), and chest tightness. I was referred last Friday and I have my appointment this Friday. I am worried about the potential for lymphoma, but it would help me prepare if I had an idea of what might happen at my first appointment.

Thank you :) 

  • Hello Dog woof 1309

    It sounds like you have had a long journey to get to this point but well done for advocating for yourself / your health

    The nurses here or Macmillian will be able to answer your questions and offer support they are very helpful and approachable.

    I would make it clear at yoyr appointment of your Access needs and what would help 

    They will ask lots of questions so be prepared to give them all your history of how your illness is presenting .....this is standard the drs want to hear from you not just look at a referral letter

    You will probably be weighed by a nurse and blood tests might be done or arranged 

    Do you have someone who could go with you for support? Take notes of what is said if that would help?

    Also write down anything you want to adk before you go and take the list with you.and if you dont understand any words or tetms used ask ask ask to have it in plain english 

    It is your health and you are allowed to ask

    Also you can ask for copies of letters sent to your gp to be sent to you. This isnt done automatically 

    I hope your appointment goes as smoothly as possible 

    Sending positive thoughts RB